Hi, I'm an Ostomate. I know how you feel. I've been there. I'm one of a million Ostomates in North America who are leading normal happy lives. We have been given a second chance. We work, make love, have babies, take part in sports, travel and eat delicious food.
This handbook is available in hard copy. Call the hotline to get your copy. This handbook was written and produced by Donela Knobel (Dunlop) (copyright 1992 and revised and reprinted in 1996) with the help and expertise of several ETs, Doctors and Ostomates, young and old, who shared their feelings and experiences.
SECTION A
What is an Ostomy Anyway?
An ostomy is not a disease. It is a change in the body's anatomy. It is a surgical opening in the body through which waste discharges when the normal action of the bowel or bladder is lost through disease, injury or congenital defect. There are five main types of ostomies:
1. Ileostomy
2. Continent Ileostomy
3. Colostomy
4. Urostomy
5. Continent Urostomy
An alternative procedure is an Ileoanal reservoir, sometimes called a J-pouch.
To avoid confusion, you should read the sections which refer to your particular type of surgery. Ask your surgeon if you are not sure of your category.
The Normal Gastrointestinal Tract
A. Mouth
B. Esophagus
C. Stomach
D. Small Bowel: about 20 feet of bowel from which nutrients are absorbed into the body.
E. Colon or large bowel: about 7 feet of bowel from which water is absorbed.
F. Rectum: a storage place for waste (feces).
G. Anus: opening controlled by a voluntary sphincter muscle through which waste exits the body.
Ileostomy
An Ileostomy is a surgical opening in the ileum (small bowel) usually done for the treatment of ulcerative colitis, Crohn's disease, birth defects, Familial Polyposis, injury and cancer. The entire colon (large bowel), and rectum may be removed or the rectum and /or a portion of the large bowel may be left in place. The end of the small bowel is brought through the abdominal wall to form (usually on the right lower abdomen) a STOMA (opening) where feces (stool) are eliminated into an APPLIANCE (pouch) usually made of plastic. If part of the large bowel remains, there may be another stoma to the left of the Ileostomy stoma. The second stoma secretes only mucus and is called a "mucus fistula".
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Continent Ileostomy
Kock Pouch: Usually done for ulcerative colitis and familial Polyposis patients. The large bowel is removed. The lower part of the small bowel is used to surgically create an internal pouch (reservoir) having a leak-free nipple valve and a conduit (pipe) - all made from bowel parts - forming a STOMA (opening) on the abdomen. Feces are collected in the internal pouch which is periodically (approximately four times a day) emptied by inserting a plastic tube (catheter) through the stoma into the pouch. This operation is done less frequently now.
Colostomy
The most common Colostomy:
Usually, part of the colon (large bowel) and the rectum are removed because of cancer, diverticulitis, familial Polyposis, birth defects or injury.
The end portion of the remaining large bowel is brought through the abdominal wall to form a STOMA (opening) on the lower abdomen where waste (feces) is eliminated into an APPLIANCE (pouch) usually made of plastic.
A LOOP Colostomy is usually made to allow the colon (large bowel) and/or rectum to heal. There is a single stoma.
A DOUBLE BARREL Colostomy is a similar construction which has two stomas. One discharges feces (stool) and one discharges only mucus.
The Normal Urinary Tract
A. Kidneys
B. Ureters
C. Bladder
F. Urethra
Urinary Ostomy
There are a number of types of surgical openings created for urine drainage because of birth defects, cancer, injury and nerve malfunction. The most common are:
Ileal
Conduit
Nephrostomy
Continent Urostomy
Ileal Conduit
The bladder is usually removed. A six-inch "piece" of the lower ileum (small) bowel is take, the remaining small bowel is reconnected and the "piece" connected to the ureters. One end of the "piece is closed and the other brought through the abdominal wall to form a STOMA (opening) through which urine exits the body into an APPLIANCE (pouch).
Nephrostomy
A surgical opening directly into a kidney (on the patient's back). Kidney is drained through a catheter (tiny tube) which empties to the outside.
Continent Urostomy
Indiana Pouch: An internal pouch is created from part of the bowel. The ureters are attached to the internal pouch which is emptied by insertion of a tube (catheter) through an abdominal stoma which has a two-way nipple valve made from bowel parts.
Ileoanal Reservoir
Usually done only for ulcerative colitis and familial Polyposis patients. A reservoir is made from the ileum (small bowel) and connected directly to the anus. The sphincter muscle is in place. A temporary Ileostomy is performed to allow the reservoir to heal. Later the Ileostomy is closed and feces exits normally through the anus.
NOTE: The type of surgery you will have will depend upon your disease and its severity and also upon your physical condition and age. You MAY or MAY NOT have a choice. Your surgeon is the person to advise you upon this.
Further literature is available upon request from United Ostomy Support Group, Ottawa Inc. at (613-447-0361).
At this point, you are confused, scared, and full of questions. This is a normal reaction. every ostomate feels the same. What it all amounts to is that when you are well again, you will be able to live a HEALTHY LIFE!!!! Read on for the answers to those worrisome questions.
SECTION B
By know you know what an ostomy is and what kind you will have. If you don't, read "Section A" again and talk with your surgeon or Enterostomal therapy nurse.
Okay? I trust you've also had your cry, possibly refused the surgery and then changed your mind and decided you want to fight and win free of disease. If you're the parent of a child Ostomate-to-be, you probably feel guilty, angry, frightened. Just remember you are going to work your way through this. If a million people can do it, so can you!
Possibly your next question is:
WHAT WILL MY SURGERY BE LIKE?
If you've had a car accident or an emergency, your ostomy will be a "fait accompli" (a done-thing) and you can skip some of this. If not.........
There will be a few tests, some uncomfortable some not. Sorry. At least, there aren't likely to be any unfamiliar ones. You will need to have a clean bowel in order to avoid infection, etc. Enemas or some other procedure may be necessary. Sorry again. Your surgeon or Enterostomal therapy nurse may have marked a spot on your abdomen where your stoma will be. Different medical people will visit, probably the person who will give you the anesthetic, a dietician, etc. This is your chance to ask questions. You won't be allowed to eat or drink on the day of the surgery. Nurses will prepare you, and you will be taken to surgery after being given medication to relax you. You'll be pleasantly intoxicated (See. It isn't all bad.) When you wake up several hours later, you will have an incision (Stapled line) on your abdomen, a sore bottom if your rectum was removed, and a clear plastic pouch stuck to your tummy. If you had a urostomy, there will be a drainage tube on the end of your pouch. There will be other tubes as well, to be removed later. Tiny painless wires may connect you to machines which monitor your heart, etc. You may be given oxygen to keep your lungs strong. When you finally get around to looking at your STOMA/STOMAS, it will look like an inside-out belly button. It could be large or small. It will be very red. This is normal because the inside of your bowel is very red. Large amounts of urine will come from an urostomy stoma. Large amounts of watery stool will come, after approximately one day, from an Ileostomy stoma. This will slow down later. A colostomy may take up to seventy-two hours to produce stool.
YOU'RE ON YOUR WAY TO RECOVERY
SECTION C
Will I BE HEALTHY AFTERWARDS?
If your surgery was for Ulcerative Colitis, you're cured. If you had Crohn's disease, cancer, etc., the chances are good that you will be free of sickness for a long time. Percentages change from year to year as the treatments for cancer and Crohn's improve. You will need regular check-ups. There are a variety of treatments and tests - blood, urine, etc. kidney x-rays, scans, chemotherapy, radiation therapy. Or you may need no therapy beyond a regular check-up. Again there will be choices. This is something to discuss with your doctor. The Canadian Cancer Society can provide invaluable help and information. The Crohn's and Colitis Foundation can also help. See the Links and Resources page for telephone numbers and websites.
The thing to remember is that you have a second chance at living. Go with it! Attend a support meeting. Talk with others who have been there.
SECTION D
HOW DO I TAKE CARE OF THE APPLIANCE?
In hospital, you will have all the help you need. When you go home, the home-visiting nurse may take over. But there will come the day when everyone grins, waves and says, "you're on your own ,kid."
Really it's not that difficult. Trust me. Your appliance will look something like this:
It can be opaque, clear, or have a slip-on cover. It's a matter of preference. Some people use a clear appliance at first (so that they can see their stoma) and graduate to fancier equipment. Your enterostomal therapy nurse will help you find the appliance that fits your stoma, your lifestyle and keeps you free from problems.
The COLOSTOMY appliance can have either a closed or open end depending upon whether you wish to discard the appliance after every bowel movement or rinse and re-use. The consistency of the stool will depend upon at what level of the bowel the stoma is located. You can get two-piece appliances which snap together like plastic food containers. You can throw away the pouch part and retain the wafer.
The part which touches your skin (the wafer or faceplate) is made of a sticky, rubbery-like substance (sometimes with a Karaya base) which adheres well even in water and protects the skin from irritation. It can be a standard size or you can cut the opening to fit an irregular stoma. The wafer will be edged by an easily removable tape. The pouch part is odour-proof plastic. Open-end pouches have plastic closing clips. Closed-end pouches may have a small vent with a charcoal filter to release gas.
The ILEOSTOMY pouch is the same as the colostomy (not necessarily with a vent) with an open end and clip. The reason for the open end is that, since your large bowel has been removed, you can no longer absorb all water before evacuation. Therefore, your stool will be of a liquid to toothpaste-like consistency and will flow more or less constantly. This means four or five emptyings during a day. You may use a beaker or some other device such as a large syringe to pour water into the end of your pouch for rinsing. With practice, it takes a couple of minutes only.
The UROSTOMY appliance has a spigot on the end to facilitate drainage or urine directly into the toilet. Urine flow will be constant. The number of times one empties the pouch depends upon the amount of liquid one drinks (the more the better) At night, you should attach your pouch end to a night drainage container to avoid interrupted sleep and to eliminate backup of urine and prevent possible infection.
I'VE HEARD THAT OSTOMATES HAVE DAILY ENEMA. IS THAT TRUE?
Some COLOSTOMATES who have regular bowel habits prefer to have an enema (approximately one quart of water) daily and wear no appliance, just a patch over the stoma. This involves about fifteen minutes in the bathroom and another 45 minutes or more in the house wearing an appliance with a long sleeve to catch stool return.
If you are interested in this procedure, ask your doctor or ET about it. It is generally better to use an appliance until you are well enough to sit comfortably etc.
IF YOU WISH TO SEE A SELECTION OF APPLIANCES, ATTEND A UNITED OSTOMY SUPPORT GROUP, OTTAWA INC GROUP MEETING.
Call the hotline (613)447-0361 for details. Check the section for calendar and events for meetings and topics.
Where Will I Get My Appliances?
Your local drugstore will order for you, or you can go to a supplier. There are several in Ottawa, some with ET's on staff You should be given a list upon leaving the hospital. Or you can telephone UOSG's hotline (613)447-0361. Check the Supplies page.
Who Pays For These Appliances?
At present in Ontario, the Assistive Devices Program (Telephone 1-800-268-6021) issues a yearly grant of $600.00 to each ostomate who will then be responsible for paying for his/her own appliances. The remaining cost is claimable on medical insurance. If you have no insurance and cannot pay, Social Services will help. If you are in a long-term care facility, the grant will be $800.00 per year. In Quebec, you will be given a similar sum. An Enterostomal Therapy Nurse will be assigned to help you apply. Ask for details and forms at the hospital, from your home-visiting nurse, from your supplier, or from UOSG.
NOTE : If you have a continent ostomy or an ileoanal reservoir, you will need no appliance.
SECTION E
What's an Enterostomal Therapy Nurse?
Ostomates affectionately call them ET's. No they are not from outer space but they can be angels. An ET is usually a nurse who has had special training to see to it that all ostomates have the expert help they need both before and after surgery. At the time of my writing, the larger Ottawa Hospitals have ET's on staff. The VON has several ET's. There are some ET's acting as suppliers. The local chapter of the United Ostomy Association (UOSG) has ET's on its board of directors and can refer ostomates to ET's in other towns etc.
Many nurses and some doctors have never seen a stoma. It is preferable for the physical care of the ostomate that they have access to an ET at the time of surgery and for follow-up care, even if it means making a trip to the city should a problem arise. Besides educating the ostomate and fitting them with the correct appliance, ET's can and do give in service training to hospital staff, organize regional and national workshops, take part in research, lecture at public meeting and take active roles in local UOA chapters, even run a summer camp for child-ostomates. If you have difficulty finding an ET, call UOSG's hotline for contacts.
SECTION F
What Kind of Problems will I Have? Will My Skin Breakdown? Will I Smell? Will I Make Noises? Can My Stoma get Blocked? Will Bowel Movements Hurt?
All feces smells. If you eat cheese, fish, eggs etc, it will smell worse. generally speaking the loosed the feces the stronger the smell. Odour is caused by bacteria. There are no bacteria in the small bowel. Therefore odour from the small bowels contents is usually food related. However, the large bowel has bacteria which cause o dour. On the bright side, your ostomy pouch is odour proof. Some ostomates use a special liquid or tablet deodorant in their pouch to control or even eliminated odour upon emptying their pouch, but ordinary mouthwash can be used.
Charcoal filters in colostomy pouches should control escaping gas odour provided they do not get blocked by feces. There are tablets which can be taken by mouth to control odour. (Always ask your doctor before taking anything by mouth).
Should methods of control through diet or deodorants not work, look for the cause. Urostomates should consider that an unusual smell may indicate that they are not drinking enough water, or that there is some infection. Talk to you doctor or ET.
Remember that everyone makes gas noises (fore and aft) and there will be times when gas exiting the stoma will make rude noises. This can be minimized by putting a piece of tissue in the pouch as a muffler or wearing a pouch cover. Or put your hand unobtrusively over the naughty stoma. Sometimes the opening in the pouch is too tight and needs resizing.
Prevent gas by controlling your diet. An empty bowel is a noisy bowel. Eat small meals six times a day. Before going out to dinner, have a small snack so your bowel won't fill up with air. Remember that your bowel will be very noisy at first. After you are home and on a regular diet, this will settle down. Don't drink through straws, chew gum or pig out on beer or soft-drinks unless you are willing to suffer the consequences. RELAX! A NERVOUS BOWEL IS A NOISY BOWEL!
If worst comes to worst, and you make an odd noise in a crowded room, stare accusingly at the person you dislike the most! UOSG has literature on diet concerns.
TAKE METICULOUS CARE OF THE SKIN UNDER YOUR APPLIANCE.
Skin breakdown under the appliance is painful, difficult (but not impossible) to clear up, and usually preventable. Watch for the signs: Pimply skin, bleeding patches, sour patches, unusal redness, itchiness, and see you ET or doctor right away. Make sure your appliance fits properly. Feces and urine contain substances which can quickly break down skin. When changing your appliance, clean your skin well with water. Only mild soaps (such as baby shampoo) should be used and rinsed completely away. Skin must always be dry under your appliance. The stoma opening in the wafer should be as close as possible to your stoma without touching it (approximately 1/8 inch). Any space can be filled with special pastes which are readily available.
Urostomates must be especially careful to avoid leakage. Appliance wafers with special convexity are available. Don't despair if you have leakage. It may take some experimenting but you will find a solution. Note that stomas can change size and shape after surgery. Take steps to find a new well-fitted appliance. If you suspect an allergy to an appliance tape or other part, cut a piece from it and do a skin test on another part of your abdomen. If the same symptoms appear in the test area, you need to change your appliance type.
Bowel movements should not hurt. Stomas have no sensation and are seldom injured except by a direct blow. A stoma may bleed to the touch and then stop. This is normal.
Blockage seems to be one of the major fears of new ostomates. If all is well with you bowel and you chew, chew, CHEW your food, you should never have a food blockage. However, some food can cause trouble for SOME ostomates. Foods with lots of indigestible cellulose I.E. Popcorn, nuts, celery, fruit skins etc. are among these. Don't worry about identifiable bits of feed appearing in the pouch, but if food residue forms a tight little ball, the stomas has difficulty passing it and there is backup. Usually liquid gets by not stool. There is resulting cramping and swelling and discomfort.
If drinking warm liquids, a warm bath and massage of the abdomen don't work in a couple of hours, or if there is severe pain, vomiting or complete stoppage of passage of feces, you should call your doctor or go to the hospital. A food blockage just inside the stoma is easily removed but should be done by a professional. Avoidance of or thorough chewing of the offending food should prevent any further trouble.
Ordinary constipation can be a problem for colostomates who should see their doctor before self-medicating. And remember that ostomates can get the flu and gastroenteritis just like other folks. Don't jump to the conclusion that all discomfort is caused by blockage. Talk to you doctor.
There is, of course, a possibility that blockage is a physical problem such as narrowing in the stoma opening, a stricture of the bowel, internal swelling, inflammation, herniation, or a twist in the intestine. These complications should be assessed by a surgeon
Are you getting the message that most problems are avoidable or fixable? Good!
SECTION G
DO UROSTOMATES HAVE SPECIAL CONCERNS?
Since urine flows constantly, it takes about ten minutes to change a urostomy appliance, usually in the morning before you drink anything. It is sometimes necessary to use a paper wick to absorb urine flow while changing. Of prime concern is preventing bacteria from multiplying in urine and traveling up the ureters to the kidneys to cause infection. Appliances must be emptied and clean regularly. Child-urostomates should be taught to empty their appliances frequently. The rules is KEEP THE URINE AS FAR AWAY FROM THE STOMA AS POSSIBLE. Pouches have anti-flex mechanisms to prevent urine from coming into contact with stomas. A night drainage container will receptacle on the floor beside the bed to facilitate drainage should be used. Some urostomates wear a special belt to hold their appliance more firmly.
As for SKIN problems, the usual rules apply, but an urostomate also can form encrustations around the stoma from alkaline urine. the appliance opening must be checked for sizing and the urine kept acidified. Check with your doctor or ET for the best method. Drinking cranberry juice is a pleasant way to maintain acidity. You can purchase nitraxine (litmus) paper to check your urine for acidity. It is generally agreed that an urostomate must learn to be a careful ostomate.
SECTION H
THIS ALL SOUNDS GREAT. BUT I'M STILL ANGRY, SCARED AND DEPRESSED, AND IT STILL FEELS LIKE THE END OF THE WORLD.
People have very strong body images which they hate having changed. Also, our society makes a big deal about bowel and bladder habits. Ostomy surgery tampers with both these. So, no matter what a remarkable person you are, you are going to have to go through the stages of loss of that body image. And it will hurt. Let's face it, no one WANTS an ostomy. But no one wants to die either. Try to be patient with yourself and give yourself time and PERMISSION to rebel, to bawl, to mourn your loss. Parents, remember that your child feels these things, too, even if he or she can't express them.
Ostomates, remember that those who love you are going through a rough time, too. They are also confused, scared, and angry. Believe it or not, this misery will pass. There will always be those moments when you mutter "####@@@" this ostomy anyway! But the rest of the time you won't even be aware of it, let alone brood about it. I speak as a twenty-one year ileostomate who has listened to a lot of worried people on the hotline and has seen these same people later take on the world with real smiles.
BUT WHAT WILL YOUR FRIENDS THINK?
First of all, you don't have to tell anyone if you don't want to. Only your doctor and your lover need know. But remember, if friends care about you, they'll be glad for you. Remember also that you'll become an expert on the subject of ostomies. Friends haven't a clue. Be open and honest. If they are momentarily embarrassed, forgive them. Don't let them treat you like a sick person. If you accept yourself, people will accept you. Okay, so your Great Aunt Clara is a klutz and cuts you out of her will. Forget her. You probably would have hated the vase anyway.
SECTION I
WHAT ABOUT MY LOVE LIFE? WILL I BE ABLE TO DATE, TO HAVE A BABY, TO FATHER A CHILD?
These are serious questions and special pamphlets and books have been written on these subjects alone. They are available through our ostomy chapter. Here is a quick summary:
1. If your love life was good before, it will be again. Probably better because you will be healthy.
2. However, SOME cancers require such extensive rectal surgery that SOME make colostomates are impotent as a result.
Remember that fear and physical weakness can just as easily cause impotency. But that being eventually ruled out, on can have a penile implant from which there are several effective types to choose. (See an Urologist). Some colostomates have orgasm but do not ejaculate. Some do not have orgasm or ejaculate. Colostomate males who ejaculated can and do father babies.
All must remember what their mates already know - successful love-making entails much more than being able to "perform".
Only ten percent of male ileosomates with rectums removed suffer sexual disfunction and usually only temporarily.
3. Males who have urostomies in childhood can have erections and orgasms but do not ejaculate because the seminal fluid is propelled backwards. They are sterile. Most adult male urostomates (if the bladder is removed) cannot have erections or ejaculate. However, a number of these report that they can and do have orgasms.
4. Ostomies rarely prevent females from having orgasms, normal pregnancies, and healthy babies If rectal surgery was extensive, there can be discomfort at first. Patience and experimentation usually work. Of course, if you suspect a medical problem, see your doctor.
Some pregnant female ostomates have caesarian sections, but the percentage is no higher that that of the rest of the population. Women contemplating ileoanal reservoir surgery should discuss possible pregnancies with their surgeon. Literature is available on the subject of pregancy.
5. As for sex, obviously a single ostomate must tell the prospective lover if intimacy seems forthcoming. It's usually not advisable to wait until the last minute. explain calmly and answer questions patiently. Give your lover time. Make sure he or she knows that sexual contact can't hurt you. The right person will accept your ostomy.
6. Gay ostomates should discuss the extent of their rectal surgery with their surgeon before the operation.
7. Lesbian ostomates should suffer no sexual disfunction.
8. Has ANY any ostomate ever been rejected by a sexual partner or even a mate? Yes. they pick up the pieces and go on. Upon reflection, those this happens to usually agree that the relationship was doomed anyway.
NOTE: There are attractive pouch cover-ups for both men and women to wear during love-making. You can purchase them or make your own.
SECTION J
WHAT ABOUT DIET?
Immediately after surgery, you will be on a soft diet. Introduce solid foods gradually and if a food disagrees with you, wait a week or so and try again. Eat foods from all food groups. Eat at regular intervals to reduce incidence of watery stools and gas. Add all new foods gradually. Chew food thoroughly at all times. Drink eight to ten glasses of water a day to prevent dry stools in colostomates, dehydration in ileostomates and inadequate urine flow in urostomates
Ileostomates must get enough electrolytes. An electrolyte is an electrical charge which plays a big role in how the body functions. They come from minerals such as sodium, potassium and calcium. The Canadian diet is high in sodium but you should be careful to get enough potassium through foods like banana, oranges, prunes, potatoes and tomatoes.
The secret is to balance your diet. If you are on a sodium-free diet for other reasons, discuss the problem with your doctor. For literature about food and the ostomate, talk to the hospital dietician or come to a support group meeting and look over available literature.
1. ILEOSTOMATES SHOULD INTRODUCE WITH CARE AND CHEW CAREFULLY: nuts, seeds, pits and high-fibre foods such as tough meats, uncooked cabbage, coconut, celery, pineapple and oranges, rhubarb, Chinese vegetables, popcorn and dried fruits.
2. If suffering from DIARRHEA: drink at least ten cups of fluid daily; avoid natural laxatives such as licorice, prunes, bran, figs, very strong tea and coffee, high-fibre foods, alcohol..
3. TO AVOID GAS FORMATION: introduce with care into your diet carbonate beverages; cabbage, green pepper, onions, cucumber, radishes, melons, avocados, apples, cheese, all beans, broccoli, cauliflower, brussel sprouts, sauerkraut, turnip, beer, corn. Avoid swallowing air from gulping foods ad chewing gum. Use yogurt and Beano to reduce gas. Avoid leaving your stomach empty for long periods of time. Relax!
4. THE FOLLOWING MAY INCREASE ODOUR in stool: beer, eggs, asparagus, fatty fish, shellfish, dried beans and peas, garlic, cabbage, onions, cheese, shallots, peppers, alcohol.
5. Use cranberry juice to acidify urine output. Parsley, yogurt and buttermilk may help reduce odour.
MOST IMPORTANT OF ALL! WHEN YOU ARE WELL, EXERCISE REGULARLY!
SECTION K
WHAT ABOUT MY CHILD OSTOMATE?
This is a special subject and cannot be adequately covered in this handbook. A list of references for the parent can be found at the Links and Resources page.
However, most the things which apply to adult ostomates, apply also to children. Here a few helpful suggestions: educate your yourself. Contact your local UOA chapter for help. Be with your child in the hospital as much as humanly possible. Be careful of your reactions. The child will take his/her cue from you. If you accept the ostomy and are open and natural, so will your child.
An older child will need your help managing the appliance at first. But you must work at helping the child become independent. Talk to your ET. You might consider asking to meet parents of other child ostomates.
When your child is recovered, don't treat her/him differently from other children. However, make sure the school nurse knows about the ostomy and how to care for it and instruct your child to go immediately to the nurse should any problem occur. Encourage the child to express ALL FEELING OPENLY and to ask questions. A support group can be particularly helpful.
TEENAGERS will have particular difficulty accepting a change in body image. Extra support and acceptance are vital. Listen, provide encouragement and find realistic solutions.
Each summer, the United Ostomy Association (USA and Canada) sponsors a Youth Rally for ages 12 to 17, and the Canadian Association for Enterostomal Therapy sponsor a summer camp for child ostomates 9 - 17. Address, telephone numbers and links are on the Links and Resources page.
Encourage your child to help other ostomates. I had a nine year old ostomate offer completely on his own to visit a five year old colostomate to "show him how healthy he was now". Children are remarkable creatures.
SECTION L
WHAT ABOUT MY JOB? SPORTS? TRAVEL? CLOTHES?
It is up to you whether or not you tell your employer about the ostomy. It will not interfere with your work unless the JOB involves heavy lifting which could result in a hernia due to weakened abdominal muscles. Wear a good support belt and learn the best ways of lifting. If your employer already knows about the ostomy and has reservations, explain what has happened to you and why you will probably be a better employee not that you are healthy. think of the reduction in sick days! Your visits to the bathroom may be a little more frequent than some employees, but they will certainly be less frequent that they were before surgery. Ask for equal time with the smokers who have to out for that Cigarette. If you accept yourself, you will be accepted by all reasonable people.
Take joyful part in any SPORT you like. There are football players and sky-divers with ostomies.
A properly fitted appliance should be invisible under normal, everyday CLOTHING such as jeans, tight skirts etc. Your supplier can show you low profile appliances for wearing under bathing suits. (No, an appliance will not fall off in water.); small appliances for short term wear. For intimate moments one can purchase or even make (telephone your chapter for directions) pretty appliance covers, shortie nighties or wrap arounds and cumberbunds with hidden pockets.
TRAVEL wherever you like. Make certain you have enough appliances with you. You could check out the local UOA (Chapter information available from your local chapter or UOA Canada, Inc. (See Links and Resources)
Disposible appliances are helpful for travel. Put your seat belt above or below your stoma. For air travel, keep your supplies with you in carry-on luggage. For customs, have a note saying "Medically necessary Ostomy supplies" in the language of the country you are visiting. Take all precautions re food and water to avoid diarrhea, but be prepared with medications. Use bottled water to rinse your appliance.
YOU CAN GO ANYWHERE YOU WANT!
YOU CAN DO ANYTHING YOU WANT!
GOOD LUCK!
P.S. Don't forget to check the Glossary and Links and Resources pages.